Today Jenni Richards QC was taking evidence from Dr Roger Moore (Policy Division, Department of Health and Social Security 1985 – 1988 and Deputy National Director, National Blood Transfusion Service 1989 – 1992)
The day started with him first taking the opportunity to offer his sympathy to all those who had been bereaved, those who were still alive and offering his assurances to all, that he would do all he could to assist the Inquiry in their investigations.
Much of the hearing was taken up with him explaining his role and the background and general set up of the regional transfusion centres and the problems they faced over the years, in particular to the problems posed by HIV.
With the arrival of HIV in the early 80s, as we have heard in many hearings before, there were many concerns that there was a balance to be had between informing people and raising awareness of transmission routes, but also not to deter them from donating in any press articles. And though self-sufficiency of the blood supply was a government objective were there still queries about the pros and cons of doing this prior to 85 – it was already a constant challenge for an adequate plasma supply to be maintained and if donors were put off donating, potentially disastrous.
Variability in funding amounts to Regional Transfusion Centres across the country to support their work, was also a constant challenge. Some regions had different amounts of funding in plasma procurement for development of blood products – and some needed more than others, depending on a number of variables across the regions.
In 1983, concerns about HIV were causing the general public’s anxiety to develop. At this stage the Haemophilia Society put out a newsletter – covered at previous hearings – which quoted haemophilia consultants advising the community that the risk of bleeds were higher than the risk of HIV from Factor 8 and encouraging the community to continue to use it.
The AIDS leaflet, which has been examined numerous times in previous hearings was continually reviewed and in 1986 following a Regional Transfusion Directors meeting it was reviewed and then again in 1987. It was also reviewed by CBLA (Central Blood Laboratories Authority) and EAGA (Expert Advisory Group on Aids), and usually Dr Moore would make up a draft and from there it would be translated into a “user friendly” form – if further changes were needed, everyone would feedback any comments and the process would start again. It was agreed this was a protracted process causing delays, but Dr Moore advised it could only have been done quicker if everyone had “been in the same room”, but as so many were involved this was the only way it could be done. At the time it was not seen as “time critical” either but the leaflet needed to be refined.
From October 1985 testing and screening for HIV was introduced, but Bio Products Laboratory (BPL) continued to use unscreened plasma until June 1986. It was thought not to be necessary as their supplies were heat treated for longer and at higher temperatures from January 1986 onwards, and so it was thought that initial screening of their plasma supply before heat treatment, was not necessary.
There was confidence at the time this would be enough, so unscreened plasma would have gone into the system and therefore, as Sir Brian pointed out, “there must have been some risk”, but the Medicines Inspectorate were content that the heat treatment was sufficient. However, with commercial products they didn’t and there was the belief that the heat treatment done by BPL was better than that done in other places.
Later evidence did show that BPL s heat treatment was indeed thorough, but there were concerns about how this process was seen to others overseas.
The beginnings of financial support
There had never previously been a scheme to pay for those who were inadvertently affected by medical treatments and despite discussions it was thought that HIV was a situation that could not have been avoided – this was the belief at the time. Jenni Richards QC asked if the department gave any consideration to making a statement about Non A Non B at the time as Dr Smithies had been quoted as saying “It seems likely that we have a finite number of haemophiliacs who have contracted HIV infection. Their position is pitiful and has attracted great sympathy in particular because of the perceived stigma of the disease which is associated with promiscuous sexual activity… The equally sad fact that a number of haemophiliacs will undoubtedly die of chronic hepatitis as a result of non-A non-B infection has not been recognised publicly…”
The Inquiry has already heard that many people with haemophilia, and those infected with “non A non B hepatitis” via transfusions were not aware that this was potentially a death sentence and during the 1980s, it has been made clear by many of the professional witnesses that the majority of their time was taken up with trying to deal with HIV. Dr Moore confirmed this “Not as I recall. I mean, looking back, my period of time there, we were fighting HIV almost totally focused on that, I would say. Did we know about what Alison (Dr Smithies) is saying here about chronic hepatitis? Yes, yes, yes, we did. We were informed by transfusion directors, Dr Gunson in the papers, we did know about it, but certainly in HS1A we were concentrating on HIV”.
And it was not until a meeting with John Moore (Secretary of State at the time), Dr Moore and the Haemophilia Society that there was even any thought of providing some sort of financial compensation for those with HIV at least. As there had previously been no financial support for people who had medical treatment that had resulted in complications there was no consideration given to it as an option. However, along with their chairman and David Watters, the Haemophilia Society brought along 3 young men who had been infected with HIV from blood products to tell their story.
The expectation from everyone was that would likely be angry and everyone was prepared for a potentially difficult meeting, but Dr Moore described how each presented their stories in a calm and moving way. One of them was engaged to be married but now couldn’t see the point in going ahead, another who was worried how his wife and family would be able to cope financially when he had gone. Dr Moore described how they were all close to tears in hearing them talk and when they left the meeting, the question became “what can we do”, rather than “what we were not going to do… and John Moore was adamant we would have to do something”.
Dr Moore explained that they decided the only way forward was to provide a welfare payment for people with haemophilia. This reflected their having a hereditary disease, and that more than one person in the family might have been affected since birth. It was unlikely that they had had the opportunity to work and perhaps build up a financial buffer and that a one off payment of 10 million pounds could be disbursed as they were a “finite group”.
Jenni Richards QC asked how this sum was arrived at and Dr Moore explained it was the most they felt they could go for– it wasn’t calculated but simply what they thought they would get allocated.
John Moore took it to cabinet committee as it wouldn’t have been able to come from the health budget, so he had to go to the Treasury – and they had concerns that the ring fence might be breached, but he persuaded them and it was announced in late 1987 soon after the meeting in November and the administration of it became known as the MacFarlane Trust.
Jenni Richards questioned the payments given out by the MacFarlane Trust at that time, highlighting that initially just £132,000 was distributed through 297 payments; the largest was just over £3,000. Jenni Richard suggested that this sum, given the moving experiences described at the meeting, might been seen as “paltry”. Dr Moore agreed.
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